So let’s start in September. I had spent the majority of my summer with serious gastroenteritis. I swear I have never experienced stomach issues like that in my life. I went through test after test with absolutely no answers. After weeks of assuming it was one thing or another it was determined that my rosacea medication was causing the almost non-stop vomiting, cramping, and diarrhea. One of the side effects of the new biologic drug was stomach related, so I couldn’t start it while experiencing all of these symptoms. I went over 4 months without any biologic medication. The last two months were hell. Then I started back to work for the new school year…full-time. It’s official, my body doesn’t like working full-time, but it is my reality. I do much better with a shorter work day. I really pray I can keep up full-time for 6 more years. I think I can, I think I can….

To say I was struggling, was an understatement. I hate being that person who complains about how I am feeling all the time….but I hurt. My stomach hurt, my joints hurt, and I was so tired that my eye lids hurt just to keep them open. That first week was brutal. I even relented to using my cane to help me through the day. It was a LONG and difficult summer for so many reasons. I’m glad to put it behind me now.

A patient goes to Washington (again)

View of the Capitol from New Jersey Ave in Washington DC

I was asked to join the American College of Rheumatology (ACR) on Capitol Hill for their annual Advocates for Arthritis event. This event pairs patients, rheumatologists, researchers, and other related providers together to represent their state. I teamed with a fellow patient/med student Jacob Anderson, Donah Crawford a patient/researcher, Dr. Ethan Craig, Rheumatologist, Michelle Hess, pediatric rheumatology nurse, and Lisa Robbins, pediatric rheumatology nurse. Together we visited 4 representatives in Congress, and both PA Senators’ offices.

We focused on two main issues:

Step therapy

Rheumatology workforce shortage

Step Therapy

I’ve written about Step Therapy or “fail first” therapy over the years. I’ve documented that it took me almost 7 years to be prescribed my first biologic drug because I had to first fail plaquenil and methotrexate. Once on a biologic drug, I had to wait almost 5 more years until I finally got a drug that made a REAL difference for me. That is 12 years until I began to feel somewhat “good”. The first two drugs that almost all patients have to try is Humira and Enbrel. I took Humira for a few years, but opted to go off of everything to do a volunteer project in Uganda, Africa. When I returned from Africa, I had to wait a while to re-start my Humira. When I did start, I was immediately reminded of how much better I felt on a biologic drug. Sadly, I had to stop taking Humira because I was constantly breaking out in Shingles (all around my eyes). I was switched to Enbrel and it was clear after the first month of weekly shots that it was not working. Unfortunately, my rheumatologist told me that I couldn’t switch for 6 months because my insurance wouldn’t authorize anything else until then.

I told my story to every Congressional aide, Senatorial aide, and even two Congressmen that I met on 9/10/19. The exciting news is that there is now bipartisan legislation H.R. 2279 introduced in the house by Reps. Raul Ruiz, MD (D-CA), and Brad Wenstrup, DPM (R-OH)—medical professionals who have encountered step therapy in their own practices. There is also going to be companion legislation introduced by Senators Lisa Murkowski (R-AK), Doug Jones (D-AL), and Bill Cassidy, MD (R-LA) that will compliment H.R. 2279. This is exciting news for patients. Step therapy was put in place by insurance companies to keep costs down. It’s not all bad, but guard rails need to be put in place to allow doctors to use their knowledge to recommend medication that they feel will actually help their patients, instead of having a patient “fail” time and again until the right drug is finally able to be prescribed. I mentioned in every meeting that we need to change the “fail first” talk. Patients do not fail on drugs. Drugs fail patients. Putting patients first is critical.

Workforce shortage

The second issue we discussed was the rheumatology workforce shortage. This is a two-fold problem impacting rheumatologists for adults and rheumatologists for children. There are resident doctors who desire a career in rheumatology, but there are not enough funded positions to accept all applicants. In 2019, there were 366 applicants for only 236 positions (**data from ACR.) It is clear that there are doctors who want to become rheumatologists, but if there aren’t funded positions to accept them, there will continue to be a shortage. The American College of Rheumatology reports that “A severe workforce shortage threatens the health and well-being of the 91 million Americans living with arthritis and other rheumatologic diseases. Congress can help these Americans access the care they need by supporting policies that help expand training programs in order to meet the nation’s growing arthritis care needs.” (***ACR)

“The ACR’s 2015 Rheumatology Workforce Study estimates there are nearly 300,000 American children who have juvenile arthritis, yet there are fewer than 400 board-certified pediatric rheumatologists in the U.S. Five states have only one practicing pediatric rheumatologist and nine states have none. As a result, nearly 75% of juvenile arthritis patients are being treated by either pediatricians, who are not trained in the most effective treatments for rheumatologic diseases, or adult rheumatologists, who may not be familiar with the diagnosis and management of pediatric-specific rheumatologic conditions or do not have adequate training on pediatric-specific issues such as growth and development.” (ACR)

When my nephew was diagnosed with Ankylosing Spondylitis a few years ago, a pediatrician told his parents that they were very “lucky to live near Philadelphia” because Children’s Hospital of Philadelphia has a few pediatric rheumatologists on staff. Over the years, I have met parents of kids living with juvenile arthritis who have to drive up to 9 hours just to see a rheumatologist. Many have to take time off of work, cross state lines, get hotel rooms, spend money on gas, food, etc. Living with a chronic illness is expensive enough, but having to add those extra costs takes its toll. Many families uproot themselves to live closer to there child’s doctor. Pediatric arthritis patients present very differently from adults at onset. If a rheumatologist or pediatrician is not trained appropriately, they may miss important signs of disease. I know my nephew’s pediatrician kept treating him for a hip injury for almost a year before doing any blood work or additional testing. Permanent damage can happen in that time.

Pediatricians may want to go into rheumatology but fail to do so because of the high costs. When a doctor finishes his/her residency, they have an option to start working. This allows them to start paying back their student loans (which typically tops over $200,000). If they decide to pursue a pediatric rheumatology subspecialty they will continue to accrue interest on their student loans during their 3 year-long fellowship. That is a lot of money to add on to an already high debt. So our PA team spoke to politicians about allowing those doctors interested in a rheumatology subspecialty to be able to defer their interest payment during their fellowship. Unlike adult rheumatology positions, there are slots that can be filled, but doctors are choosing not to over burden themselves with crushing debt. Honestly, who can blame them? We asked our politicians to consider supporting the Empower and Redi Acts.

In Congress we asked our representations to consider supporting the “EMPOWER for Health Act (H.R. 2781), which would reauthorize several workforce programs, including the Pediatric Subspecialty Loan Repayment Program and the Title VII healthcare workforce development grant programs. These programs support loan repayment and provider training in rural and underserved areas, including providers who do not currently qualify for the Public Service Loan Forgiveness program, which is limited to nonprofit workers and faces administrative problems. This legislation was passed by the House Energy and Commerce Committee and awaits a full floor vote.”

We also asked them to cosponsor the REDI Act (H.R. 1554) to amend the Higher Education Act to defer the accumulation of interest on student loans for borrowers while they serve in a medical or dental internship or residency program.

Arthritis impacts millions of people every year. We rheumatologists. When visiting one congressman’s office, his aide asked us if what type of loans (federal or personal) were we talking about. She made a comment that I felt was both off-handed and ignorant. She said, “It is acceptable for a doctor to have up to $250,000 in loans because they will be able to repay them with their job”. Really??? It’s acceptable to have that amount of debt? I don’t know if I agree with that. Oh well, that is a blog for another day…

If you want to support the needs of patients, call your representatives to have them support the following bills: H.R. 1554, H.R. 2781, and H.R. 2279. You can make a difference!!

Here are some photos of my 3 days in DC.

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I say it every time I attend Advocates for Arthritis that it is an absolute honor. I suffer a lot in the days following because it is a lot of walking, but it is worth it. I was able to see my fellow patients/friends Amanda from All Flared Up, and Charis from Being Charis. It’s these events that help to form friendships and I always feel energized spending time with other people who want to make a difference for those living with chronic illness.

Patient power!!

Charis and Kelly

Kelly, Amanda, Charis

I turned 50!!

Are you still reading?? If so, THANKS! Now we get to talk about my 50th birthday!!! If you are on facebook, you know when people have birthdays they have the option of raising money for a charity of their choice. I decided that I wanted to raise money for a fund that helps rescue Cavalier King Charles Spaniels get the medical treatment they need. I decided to do an online auction because it would be fun. Over the months, I would buy items that were dog and/or cavalier related. Then I put out a message to friends to see if they could donate. I ended up with 56 items and over 200 people in the group. I don’t have final totals yet (still collecting some bids and shipping costs are crazy), but I raised a lot of money for dogs like Georgia Grace. The only downside was packaging up the 29 items that I had in my home.

Fuckles (I need to trademark that)

This was my hand after wrapping up posters, dog clothes, purses, and lots of other bric a brac. Ouch!! I was joking with my friends it was like cankles for knuckles. We now call them “fuckles” (finger knuckles). The fact like it sounds like a bad word is even better! LOL

This morning, I got up and carried my 29 packages to the post office and stood in line for quite a while. The whole time I stood there I thought about Georgia Grace. I’d only do something this difficult for me, for her. My ride or die. My #spooniedog. My fierce little warrior who lives with syringomyelia, hip dysplasia, chronic dry eye, chronic dermatitis, chronic valvular heart disease, diabetes, and diabetes related complications of UTIs and infected paws and yet she continues to smile and live her best life. She was my 40th birthday gift to myself, so celebrating our life together 10 years later was perfect. The hardest part of my trip to DC was leaving her behind. I don’t plan on doing it again any time soon. She is still looking great at 10, and I’m trying to keep looking good at 50. I’ll keep fighting for both of us to keep feeling good as well.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011.
Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis.
Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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2 thoughts on “A little bit of this, a little bit of that…”

Kelly, I am so sorry I missed the Washington event again this year. When I saw you were in DC, I looked and thought darn I should have applied. It woudl have been fun to be out there with a great group like this. Well maybe next year., I hope.

And 50? Heck you do not look a day over 30. Of course I am pretty sure I am not a day over 70 and I celebrated my 62nd birthday this year.